Why do bad things happen to good people?

· de · en autism. ·

My little bear passed away. He had been battling the fight of his life and decided to slip into heaven a few minutes ago. I am reblogging what I wrote about him some time ago. Hopefully I will be seeing him soon again, when he will continue to show me the path forwards. You were and will always be my little hero.

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During my career as a physician I have had on occasion the opportunity to serve as a grief counselor. More than once I have recommended the book “When Bad Things Happen to Good People” to those I was counseling. The book features, author and Rabbi, Harold Kushner trying to answer the questions that arise whenever a personal tragedy strikes. In the case of Rabbi Kushner the book was prompted by his introspection as to why his son had been fated to die in childhood from a progressively debilitating condition.

I am not sure if there is a greater feeling of loss than dealing with the death of your own child. I know this from experience. My grandson, Bertrand, is likely to die in the next few years. This is just enough time to get to know him, love him, and cherish the times we had together. My grandson has a genetic condition that makes him accumulate proteins in his cells. Ultimately the accumulated products impair other metabolic reactions thus leading to cell death. In the case of neurons, these cells are not replenished and the brain slowly withers away.

We knew from early on that Betrand needed medical attention. He cried a lot, did not seem to sleep, and could not be comforted when we hugged him. He also developed conspicuous hand mannerisms and EEG exams showed the presence of almost constant seizure activity. His parents took him to all the major academic institutions. At the NIMH the physicians prompted that by symptoms he was one of a few boys having Rett syndrome. However, additional genetic tests showed that he lacked the corresponding mutation for that particular disorder. In the end we finalized our tour of academic centers with a strong suspicion that Bertrand had a genetic condition that clinically manifested as part of the autism spectrum of disorders.

One physician visit after another, his parents received the terrible blow that Bertrand would probably die sometime in the near future and that there was very little that modern medicine could do for him. Periods of relative tranquility have often been interrupted by trips to the emergency room and then to the intensive care unit. A slight glimmer of hope came to us when a mutation, accounting for his symptoms, was discovered at Duke University.

I tell my daughters that a parent is only as happy as the most dejected of his progeny. This is the cross my family has had to bear, the weight on our shoulders, and the reason for many of my white hairs. When autism is characterized as a “pervasive” developmental disorder, it means that in order to get to know the same, a person would have to read about the whole of Psychiatry. This is the case because so many cognitive functions appear affected in autism. However, the meaning of a «pervasive» developmental disorder changes once it affects you personally. From this perspective pervasive means that autism is with you every hour, of every day, of every week.

For the most part I have made peace with the fact that my grandson will die in the near future. Yet, there are moments when my family’s adversities hits me like a lightning bolt and rips me apart. My daughter drafted a bucket list for Bertrand. It is painful for me to consider the same. Among other things, she would like to see Bertrand ride a horse, visit Disneyland, go trick-or-treating and take care of a pet. For many of these, Bertrand has already achieved them.

I have many pictures of my grandson but his childhood album is unlike that of my daughters and other grandchildren. Many of his photographs are in hospital beds or taken during trips to different academic institutions. Indeed, Bertrand has visited so many hospitals that he used to fold his arms over his chest and would not allow for personal contact. We could not decide whether this was part of his autistic traits or a protective reflex against having more blood draws.

I am now getting into an age where I have to face my own mortality. If anything, it makes me very uncomfortable to think that if I died many of the special memories about my grandson would die with me. I am not sure why I have this intrusive thought, but it pains me deeply. And yet, in the midst of this pain we have to be strong. Ultimately Bertrand not only has to accept his own feelings of self-consciousness but also those of the people around him. So we as parents have to be strong and resilient by working on our own coping skills.

There are many happy memories about Bertrand that I would like to share with the world and maybe this has been the reason for my blog today. I have learned a lot from my grandson. He is low-functioning autistic and non-verbal. Instead of verbalizing his thoughts, he creates guttural sounds. In many occasions his sound makes for a happy song, for in the face of adversity, Bertrand has been a happy child. This is the way I remember him.

I can’t express more admiration for my son-in-law and my daughter. Every day they surpass my expectations. Humans are primarily storytellers. The stories we tell ourselves are the lines that we live by. If you say to yourself that you are unlucky and unworthy you will live your life being depressed and lacking control of the same. So we have to be strong and stress the positives in our lives and those of our dear ones.

A person facing a tremendous life adversity could not be blamed for cowering and blaming God. However, my daughter and son-in-law have used all of their emotions to make Bertrand’s life be a positive. They created a foundation, established research, and collected a cohort of similarly affected individuals that is now being studied by the NIH. They decided that Bertrand’s life had a purpose.

In all of our struggles my family feels eternally thankful to have met so many wonderful and supportive people. Many of them have had their own cross to bear but they have done so gracefully and with humanity. In a passage from the Bible the disciples asked Jesus about a man who was born blind, and Jesus answered, “so that the works of God might be displayed in him.” Indeed Bertrand has been a miracle that has been loaned to us. And we all feel grateful for it.

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To my little bear, grandpa loves you. Hugs and kisses.

48 Respuestas a “Why do bad things happen to good people?”

  1. Dear Dr Casanova, condolences to you and your family for the loss of little Bertrand. Through your blog, other families came to know of him and how much he was cherished.

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  2. My heart is with you and your family tonight Dr C, your care for your grandson and for this community has always seemed to me to be intertwined, as I was reminded just the other day when you and your wife presented for ARI on asd and the ans, and shared your heartache at being unable to help your own grandchild using tms. I am so sorry for your loss, and so happy that you had him. Wishing you peace, love and gratitude. Jacalyn

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    • At the time of the lecture my grandson was in organ failure. Nothing can prepare you for such a loss. I had been able to suppress everything for the lecture but when his memory came back up I just lost it. I have been extremely depressed for the past few days. Thank you for your kind words.

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  4. Dear Dr. Casanova,
    I am so so sorry for your loss. It must weigh so heavily on your heart. Thank you for reminding me of that book. I have heard of it before, but I have not read it. I feel like I could use it myself right now. My sister is dying of ALS, there is no cure, and her lungs are compromised. She is getting close to some very difficult decisions. There have been so many trials in my life the past few years, almost losing my husband twice last year, the chronic worry that he will be severely ill again (especially being immunosuppressed with a heart condition in Louisiana during the COVID pandemic), my Mom’s unfolding dementia, that it is weighing very heavily on me. I did start seeing a therapist last fall to help me cope. It was one of the best decisions I could have made, because I don’t know how I would be holding on if I hadn’t. My heart goes out to you and your whole family, especially your daughter and son in law.
    Wishing you peace and the comforting memory of the light of his life.
    Karen

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    • SO sorry to hear about your family. My mother also died of Alzheimer/CVA dementia. After a few months, I could not take care of her. She was for several years in an assisted living institution. I hope that the therapist may be of help during these troubling times. Best regards

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  6. Dear Dr Casanova, condolences to you and your family for the loss of little Bertrand. You are the scientist I admire most when it comes to dyslexia and autism. Although we are from different backgrounds, races, religion, cultural background, one thing unify us : having a kid with a special condition. My son is dyslexic and I have exited my career to find a cure for dyslexia and my own metabolic condition, had a PhD at my 50s, and come up with Auto Train Brain. I have faced many adversities during 3 years. I have watched your webinar and your cries when telling you couldn’t solved your grandson’s condition with TMS, this part also made me cry. We speak the same language no matter what background we are from when talking about these conditions. Please continue your work as you show the right way for others. Such as I have understood how anxiety occurs when I have watched your webinar. Warm regards, Gunet Eroglu

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  7. Dr. Casanova, I don’t know if you remember working with me as your communications lead, but you and your blog have been so helpful to friends of mine. I am so sorry for your family’s loss. My friends, David Faughn and Glenda McCoy are friends with your daughter’s family. Their daughter has a NUBPL mutation and I helped them get into a trial at UNC-Chapel Hill when they were looking for a diagnosis.

    Your blogging in Spanish helped a colleague of mine who was struggling with her family in Cuba and Mexico understanding her two sons’ autism diagnosis.

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    • Ellen, of course I remember you. Thank you for the kind comments. It is nice to know that my blogs have been of use for families, even when in different countries. Right now quite depressed and not thinking well. Taking a break from social activities. Prioritizing my family. Thank you again.

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  8. Manuel, I am so sorry to read this. What a beautiful boy. Holding you in my thoughts. What a lucky boy to have had all that love and affection and understanding in his short life. Take time to heal and take care of yourselves. 💕Elizabeth O’Heaney

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  9. Manuel,
    Why does a good God allow evil to exist, particularly death that He factored into our human makeup? The only possible reason can be, to provide every possible means whether we want it or not, to move us closer to Him.

    Condolences old friend,

    Tom

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    • By his example he taught me how to face adversity with a smile and how to prioritize the problems in life. I have never been more certain of a God and heaven as when I was close to my little angel. Thank you for your words.

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  10. Our grandchild also has NGLY-1 Deficiency. When he was diagnosed, my son’s family was guided toward the wonderful NGLY1 community where they connected with other parents facing the same crisis. We traveled with them to the 2018 CDG conference in San Diego where they were greeted so warmly by your daughter and son-in-law. It was a remarkable gathering of families and scientists and I frequently reflect on the presentation by Matt on the journey that led to Bertrand’s diagnosis. We enjoyed dinner sitting next to the Mights. Winston fell asleep on my arm, exhausted from his family’s long day at the conference. Being able to give Winston a place to rest his head was my way of giving back just a tiny bit to the people who were working desperately to help my grandson. My heart aches for you and the loss of your Little Bear. Sending blessings and prayers for your family as you celebrate the life of your special grandchild.

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    • I have often been amazed by this small world and by our shared humanity. I deeply empathize with your family’s plight; their struggle is my struggle. I am hoping that Bertrand’s valiant fight will help the next child coming along. Bless you and your family

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  11. I am very sorry to hear about your loss. I learned a lot reading about Bertrand Might’s struggles. You fought the hardest for him you possibly could.

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  12. Manuel. Delores and I share condolences for your loss, and pray that the lord Jesus will comfort and bless you and your family with His presence. It is wonderful to know that the next time you see your grandson, he will be completely healthy… no more pain, and anxious to share his joy with you! Sincerely, Frank and Delores Nelson

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    • Bertrand spent most of his time in a wheelchair. His legs had atrophied and contracted with spasticity. Wearing pants pants was a struggle. I look forwards to the time when my little angel is able to stand up and wear his big-boy’s pants or when he will be able to tell me how much I bothered him when I tried to kiss him or pinch his cheeks. Very proud of him. Thank you for your words of comfort.

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  14. Very sorry to hear your sad news. Some years ago my best friend took his own life. He was high functioning autistic but also his suicide may have been motivated by a blood disorder. So these tragedies affect us a lot and we try to then explain how these things happen. Hopefully create more awareness. If it’s any comfort to you I don’t believe we lose our loved ones beyond the physical reality of it. For all of us life is very brief as we perceive it but life goes on in a different way when we pass away. Again, sorry to hear of your loss.

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  15. Dr. Casanova; usted no me conoce pero soy una de las organizadoras del Congreso Panamericano de Autismo junto con Veronica Martínez Cerdeño…. Se que en estos momentos no hay palabras suficientes que sirvan para mitigar el sentimiento que le genera esta pérdida. Sin embargo le mando un caluroso abrazo con mucho afecto a usted y a su familia.

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    • Muchas gracias Lina. Se aprecian tus palabras. Mi pequeno osito sirvio de ejemplo a muchos otros. Me guio en mi carrera y por el supe apreciar muchas de las necesidades de ninos igualmente impedidos. Saludos

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  16. Such a beautiful tribute to your grandson and your family.

    If it offers you any peace, I think I will remember your post for as long as I live and i like to think I have a long time left.

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  18. My condolences I bought & read your book and think you fought very hard, against impossible odds so you can be very proud. It must have been maddening taking on the extremists of the neurodiversity movement too I feel for you there.

    I sometimes envision about taking my son in a time machine to the future and them fixing his disability how easy a job it may be.

    Alas we`re like medieval people in the black death totally helpless if only they were aware of penicillin.

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    • This may sound strange but as someone who suffered an autism condition from childhood onwards, I was traumatised when my German Shepherd died. Bear in mind I am normally very unemotional. However on that occasion I sobbed and howled by myself in grief. He was the best friend I ever had and most definitely taught me how to feel emotion. It’s a recognised fact autistics often bond with dogs very closely so his death hit me very hard. Also most odd was I felt a hot glow within myself as he died and a strange feeling. After that – very empty and alone. It was then I thought about H.G. Wells Time Machine and time as a phenonenon in physics. Have you ever thought that when you look at a star in, say, Vega the light took 7 years or so to reach your eye? So the time that bonds us with loved ones follows laws we only partly grasp. I like to think of death as not being the end of life but more a closed door to what’s beyond.

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  19. Dr. Casanova, I am a mother of a beautiful autistic boy and I am a child and adolescent clinical psychologist. I was just watching your extremely helpful and informative lecture through the Autism Research Institute, and I decided to look you up, and came across this post. I am so incredibly sorry for the loss of your grandson. I cannot even imagine the pain you and your family are going through. Your blog post is such a beautiful tribute to your grandson. A few years ago, I lost my 17 year old brother to suicide. I thought how ironic it was that I decided to become a psychologist to work with kids, and I couldn’t save my only sibling from mental health challenges. I felt angry with God. But with time, I’ve come to make meaning of the traumatic loss. I have no doubt your grandson’s life will be worth so much in this world. I hope you have all the support that you need. You and your family will be in my prayers tonight.

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    • When I gave the lecture I was just trying to hold it together. My grandson had been hospitalized with constant seizure activity apparently from septic shock (the organism was never found). He then went to complete organ failure. When he came up in my lecture, I just could not hold my composure. I am still weeping. I cried when he was cremated and will probably be crying again this Sunday at his service. I have to imagine that the pain and emotions will remain for years to come. He was an angel. who guided me in path and will continue to do so. Thank you for your kind words.

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  20. Hi Manuel

    The loss of loved one and a dearly cherished person whom you clearly connected with on deep introspective and emotional level was your beautiful grandson.

    Sometimes words fail and seen numbing to process such a deep event. I wish you and your family peace during this extremely difficult period. 💓

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  22. My condolences to grandpa and family. I hope the foundation will consider working with #actuallyautistic researchers to make strides in comorbidity studies, mitochondria disorder, and conditions that guarantee premature death for myself and my autistic friends.

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      • It will take some weeks till the initial shock adjusts. After that, there is always a void when we lose loved ones. My cousin died at only 50 years of age with three others in his own light aircraft. I adopted his dog and cared for him over 7 years. I felt it was something I was meant to do. Now I guess I still await answers to things I don’t understand. As regards to my cousin it was a huge blow to his parents. Especially to his mother. Sometimes I phone her and keep in touch.

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  23. Querido Dr. Casanova
    Mi mas sentido pesame por la perdida de su nieto. Me ha tomado mucho tiempo para poderle dar mi pesame porque queria saber muy bien lo que le queria decir. Yo aprendi acerca de su nieto cuando su yerno hizo el documental acerca de la enfermedad rara genetic de su nieto. Yo tengo in hijo con autismo y una enfermedad rara PTEN mutation. Cuando vi el documental de su nieto me acorde de la pelicula «Lorenzo oil». Y en mi cabeza se me ha metido la idea que tambien puedo ayudar a mi hijo como lo hizo su yerno y el papa de Lorenzo.
    Tambien le queria decir que el unico libro que me ha dado cierta paz ha sido durante los momentos mas dificiles de los diagnosticos de mi hijo has sido «Why do bad things happen to good people?». Que incredible que este libro nos ayude a procesar el dolor de ver un ser querido que has sido diagnosticado con una enfermedad or que ha muerto.
    Yo soy de Costa Rica y aya estudie medicina. En USA hice mi especialidad en siquiatria infantil y la mayoria de mis pacientes tienen discapacidad del desarrollo y autismo. Yo se que usted estuvo dando presentaciones en Costa Rica y de hecho conocio a mi sobrina. Ella me mando las fotos con usted y su esposa. Ella acaba de terminar la Carrera de medicina y quiere hacer pediatria y desarrollo tambien.Ella tiene 3 hermanos y una sobrina con autismo.
    Gracias por todo su aporte a la investigacion en autismo y TMS. Me encanta aprender de personas como usted and Dr. Frye.
    Aqui estoy a su servicio si algun dia le pudiera ayuda en lo que fuera.
    Pase buen dia

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    • Muchas gracias. Tus palabras prueban que este mudo es bien pequeno. Aqui estamos para ayudarnos los unos a los otros, empezando con aqueloos que mas lo necesiten. Un fuerte abrazo mi querido hermano Tico.

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